Well, today was a most interesting day. My husband went to the neurologist. I again referred to his mom having GBS and the neuro said "it's not related". I just looked at her and said "I beg your pardon, but you said my husband has CIDP and that is most definitely related to GBS. and she said :

"well, we're not really sure what your husband has, he had protein in his spinal fluid and that means auto-immune, so we are thinking along the lines o CIDP, but it might be a variant of it. That's why I wanted him to try the IVIG. We are going to give this a few more rounds" ???????? She also examined him, did the neurological thing, made him walk on his soles, his heels (he coudn't). He couldn't kneel on the floor either.

She's very thorough but I left with more questions than when we walked in.

more talk, more talk and then she says:

I want Alan to see a physiatrist. Now I have never heard of such a thing in my life. Have any of you??

So we go to the second floor of Methodist Hospital to make an appointment. She had an opening TODAY. So we went at 3 p.m.

I learned more today from that physiatrist than I ever learned in 18 years looking for a cause to Alan's neuropathy. She tested him this way, that way, made him walk on the balls of his feet, on the heels (he can't balance and I never knew that). She tested his sensory stuff.

She came to the conclusion that his problems have absolutely nothing to do with his back.

He told her "yesterday, I saw Dr. Theirl and he used a G5 machine on me and when he does that, I am in heaven, all the pain in my feet went away".

Now this is exactly what she said to my husband: "Maybe you think you felt better???" I looked at her and said "Are you one of those doctors who think his pain is all in his mind?? and she laughed and said "absoluely not, but I can tell you the his problem has nothing to do with his back."

She did the reflex test and she explained that his reflexes were perfectly normal and IF IT HAD ANYTHING TO DO WITH HIS BACK, HIS LEG WOULD HAVE JUMPED STRAIGHT UP WHEN SHE HIT HIS KNEE WITH THE HAMMER THING. So to her, and according to the exam she gave him, and more important, she had the results of his MRI in front of her and she said to Alan:
"Alan, nothing here says Herniation. If it did, I wouild say you had a shot with the back thing, but all you have is bulging discs and they don't impinge on nerves so it's ot your back".

She then said "you might never really know why you got this or how you got this. We only know what you have, not HOW YOU GOT IT!!!

She said he has Sensory polyneuropathy and I said "we know this but why, is it because his mom had Guillan Barre Syndrome?" and she goes "how do you know for a fact that his mom had this?". and I had to admit that his sister even questioned that diagnosis over 40 years ago. Alan's sister said they were not sure exactly what the mom had (even though they were told it was Guillian Barre).

Th physiatrist said: "I believe in Eastern Medicine, in Acupuncture, etc. (She's a medical doctor by the way). She had acupuncture done on her back. Alan told her that he did the acupuncture thing years ago but stopped after 6 months. She said "but you got better because you just told me you used to be on the fentanyl pain patch and you no longer use it". Then she said "the best thing for you is to exercise". Alan said "I don't understand any of this".

That's when I opened my mouth and said "Alan, what she is saying is that you should continue to go to the gym, exercise your calf muscles, they'll support the nerves in your lower extremeties and this will prevent you from getting a drop foot and being in a wheelchair in 10 years". As soon as I said this, she jumps up and says "THAT'S IT EXACTLY""". She said "I didn't want to put it into those words but that's exactly right. Exercise, getting the muscles strong in your legs, well, that's the best thing you can do in my opinion. It really doesn't matter why you have this, the treatment is the same. The IVIG might work, (I don't think she thinks it will), but we're giving it a shot. But the exercise and weight loss is the reason you are walking, and doing better than you were 4 years ago"

So we are back to square one. They are not sure if he has CIDP, a variant of it, or whatever it is THAT HE DOES HAVE!!!

She did say "I'd be very interested to know if any of his relatives have ever used a brace?" I wonder why she wants to know this????

We don't know but believe me we are going to find out!!!! I'm going to call his sister and ask about his relatives. He has never met over 100 cousins and they all live in Chicago. His mother came from Chicago and moved to Brooklyn. His sister never mentions that part of the family

And the plot thickens!!!! Will update!!!

melody

He is not nearly as incapacitated as many w/CIDP. I've kept fighting but I keep falling and have to say off my feet each year for two-month stretches...it's hard and dangerous starting over. My PN/CIDP is up to my 'seat' on my legs and almost to my elbows on my arms. The balance issues and the pain at times is not something I speak of often.

I have to admit tho, that the fact Alan is ABLE to work out, and walk without a distinct funny 'tilt' is extraordinary. His own instincts in this quarter, are holding him in very good stead and definitely keeping him out of a wheelchair. I am no longer really able to 'do stairs' now, and I bet you are on the second story. I have to admit I am jealous.

Don't forget that there are at least 2 dozen autoimmune neuropathies and the list grows yearly... I don't know if the powers that be are lumping new 'unknowns' into the CIDP category or not. Little research is being done in this quarter, at least, in the US.

Tell him to keep doing what he's doing, he will beat the odds for sure! - j

Yeah, I'll tell him. And I thank you for taking the time (with all that you are going through).

We need more research into this neuropathy thing.

I forgot to mention one thing that the physiatrist said to us:

We were sitting across from her and as we were about to leave, after finishing up she turns to us and says: "What I don't understand is why I'm seeing more and more people in Brooklyn, with this type of neuropathy, I just don't get it". No known cause, just the polyneuropathy'.

That's exactly what she said.

bye for now.
Melody

Hi, Melody.
I am new here just now. read your post.
Re:cidp, my first neuro said i had cidp and treated me for it w/IVIG and it made me sick as a dog, like the worst flue i have very had maybe worse. anyway she quit her practice to have a family so i go to another neuro and he said I don't think you have cidp because your reflexes are to good and you would not have reflexes in the ankles w/cidp. then he and another neuro said it was coming from my back, went to a bone surgon and he said no, so next neuro said i had diabetes, diabetes DR. and other dr.s said not so????
my reflexes and muscle strength is ok, but feet, legs, left arm and left side of face burn. so now looking into Small Fiber neuropathy, have you heard if this? they do acouple of test for this a skin test and a sweat test. well enough for now. will check back. good luck.

--remember, we talked about this before; "classic" CIDP generally comes with far more motor symptomology than Alan has ever had, yet there are sensory variants that have minimal or no motor symptoms.

As Dahlek notes, there are numerous autoimmune mediated neuropathies; many of these are purely or primarily sensory, and can be caused by a number of different mechanisms. The research neurologists, such as Latov and company, suspect that a good number of sensory axonal neuropathies that are currently labelled "idiopahtic" probably have autoimmune genesis; the autoantibodies that medite them just haven't been discovered yet. (The ones that we do know about have only been identified over the last 20-25 years or so. The research is slow and painstaking.)

But--in thinking back over the tests you said Alan had (not all of which I remember, and I don't have the leisure to check back all your old posts now); did he ever get titred up for anti-sulfatide antibodies?

Check this out:

http://www.neuro.wustl.edu/neuromusc...html#sulfatide

There are also a few antibodies to nerve gangliosides that can cause similar symptoms that you can read about in the same section (that are very rare)>

The other thing that came to my memory is that you had said Alan at one point had a positive anti-nuclear antibody titer (ANA)--that leads to suspicion of some sort of vasculitic autoimmunity.

Both of these can cause primarily sensory neuropathic symptoms in the extremities. The spinal fluid protein will tend to make neuros think CIDP or its variants, but there may be other immune processes going on that wouldn't fall neatly into that category (and in this realm, the categories are still quite fluid, anyway--we really don't know all that much about autoimmunity, and whether, as the people on the gluten boards who talk about zonulin and tight junction dysfunction assert, all autoimmune processes start from a leaky gut letting pathogens pass through that the body overreacts to. Now THAT'S a nice read if you want to pursue it.)

Hi Glenn:

I'm so tired of all this ANA, titres, anti-body, whatever. Alan (thank God for Zoloft), just left to go on a second job interview. Imagine!!! He got IVIG on Monday and Tuesday, went on a job interview on Wednesday, went to two doctor appointments on Thurday (and was told he might not have CIDP), and this morning, got up and went on a second interview (to the same place he went on Wednesday). And all during this, we talk about our son, who is completely lost to us because he is sitting in an apartment in California and goes on the computer 24 hours a day (because he has aspergers).

This would ruin anyone else. This would take the family dynamics and kick it in the butt. I have to give Alan a lot of credit. Maybe it's the zoloft, maybe it's the fact that I take such good care of him. I don't know.

He's a lot better off than many people on the boards because he can go to the gym and work out. It makes him feel better and after speaking to the physiatrist, now we know WHY.

Oh, this is important, at least it works in Alan's case. Before he goes to bed at night, when he takes the Alprazolam, he puts Blue Stuff on his feet. He coats all the toes with it. In five minutes, he's snoring away. So at least he does manage to get a good night's sleep. He could never do this 5 years ago. He was on the fentanyl. Only going to Dr. Theirl, getting the G5 machine, and my massages, etc. allowed him to go off all pain meds. Like I said, the physiatrist believes that doing this, will get him better. Because we may never know why he has this polyneuropathy going on, at least it's manageable. Oh, she also said AND THIS IS MOST INTERESTING!!!

"I have many diabetics coming in and they have polyneuropathy, and everybody else assumed because they were diabetics that they had to have DIABETIC NEUROPATHY.

She said "We are finding more and more of them have Idiopathic Polyneuropathy, and it's NOT diabetic neuropathy". Now how interesting is that conclusion!!!!

I guess we shall continue to do what we do and I'll support him the best I can.

I mean, what else is there, right?

Melody

Hi Melody, If you get a chance next time you see her ask if the people who she is seeing with idiopathic pn were at or near the world trade center and if she has ever asked them. It seems like an obvious question but you would be surprised at how often the link is overlooked even with respiratory problems.

HEYJOE!!!

That's an excellent idea. I am writing myself a note to that effect. The next time we see ANY OF OUR DOCTORS (they all know about Alan's PN), I'll ask the question.

I know that many of the people have suffered Respiratory problems. but god only knows what other problems they got from that exposure.

My girlfriend's son (only 25) was on the roof, it was his first week on the job. I'll never forget that night as long as I live.

So I shall ask about being around the World Trade Center. You know, no one ever mentions PN in relation to being exposed to stuff at the World Trade Center. Wouldn't it be amazing if, when I ask the physiatrist "How many people that you have diagnosed with Idiopathic PN, well how many were at the World Trade Center on 911???". She would have to go and contact them all and ask questions to see if there is indeed a pattern.

Want to know what I think. There is always a CAUSE for anything. We just haven't found it yet. I don't care if it's inherited, genetic, Exposure, WHATEVER!!! Something is causing people to get tihs polyneuropathy.

And when I told her that the first question Alan was asked 18 years ago when he first had the symptoms of neuropathy and we went to the doctor and the doctor blurted out "Have you ever had sex with a vietnamese woman"? Well, you should have seen the expression on her face yesterday. She said "why on earth did he ask Alan that". When I said "Vietnamese prostitutes....think about it......! and she said "Oh I get it, syphilis, yeah, long term syphilis results in neuropathy......

Alan told her 'I was tested, so don't worry". Negative.

Amazing.

mel